Biopsy Negative - No Diagnosis Given

[horsegirl]

I discovered the gluten free diet in January `07 after being diagnosed with fibromyalgia. After a couple of weeks gluten free, I felt better than I have in years. As time went by, I learned about Celiac disease, & began to worry that's what I had.

I went back on gluten in mid-June, as my primary doctor wanted to do the Prometheus blood tests.

The tests came back negative, as I had only been back on gluten about 2 weeks when they were done.

I had the stool tests through Enterolab done, & they showed positive results for all of the gluten

antigens, as well as mild malabsorption, & a positive gene test for HLA-DQ1,1 (two copies).

I also was positive for anti-casein antigens.

I had the endoscopy/biopsy on 8/10, after being back on gluten for 6 weeks.

I just talked to the GI doctor, who says the biopsy was completely normal, & no damage apparent to

the villi or cells. He said he cannot give me a diagnosis, other than to say I "have the potential" to

develop celiac/gluten intolerance down the road, if I kept eating gluten. He doesn't think the stool

tests are indicative of anything significant either (??)

Those 6 weeks I was on gluten again were the worst ever. My neurological symptoms were so bad it was scary (severe pain, fatigue, brain fog, weakness in my arms, depression, anxiety.....)

And, I had GI symptoms too (D, C, cramps, nausea, pain, vomiting).

Since going gluten free again on 8/10, all of these symptoms are disappearing, which is great!

The doctor said today that the best indicator is that I feel better when I don't eat gluten, & I get

progressively sicker when I do. He said perhaps the lack of damage on the biopsy shows that being

gluten free has healed any damage that might have been there in the past.

He does want to do a hydrogen breath test for bacterial overgrowth, just to make sure that's not causing some of my GI symptoms (which are basically gone now that I'm gluten free again).

So, does this mean I have non-Celiac gluten intolerance? I don't really need a diagnosis for any reason, but I guess it makes it easier to explain to others what "my problem is" when I have some

title to use, & even the "specialist" can't do that!!

Any suggestions, advice, etc would be greatly appreciated.

Sorry this is so long, but I wanted to include as many details as possible.

Thanks!

[CarlaB]

It sounds to me like you have a good GI.

I would just say "gluten makes me sick." People don't really want more of an explanation than that anyway. If they press, say, "GI symptoms, you really don't want details."

Do the bacterial test. I felt better gluten-free at first. All my symptoms went away. Then I'd sporadically have diarrhea/stomach pain with no explanation. It ends up I have an overgrowth of klebsiella and citrobacter bacterias (mine was a 3 day random stool test).

I am on oil of oregano, uva ursi, and plant tannins along with probiotics to restore the balance in my gut. It's working. We started with abx to kill the bacteria, but as soon as I got off them, it came back ... my doc didn't want to keep me on them longer than the 20 days I took them, so we're trying the herbs.

I am also double DQ1.

[hathor]

Non-celiac gluten intolerance is as good a title as any, at least some folks use it. We here will know what you mean. Then again, we know what it means to be double DQ1 Honestly, we should start our own little mini support group it seems ...

For "normals," I just call it gluten intolerance. One is lucky enough if people know what gluten is; to expect them to understand different types of intolerance, different schools of thought among doctors, etc. is too much. If they don't understand, I just say I get sick when I eat things with wheat, barley or rye (I leave oats out of it ... that's another whole conversation) and that they really do NOT want me to go into my symptoms.

Sometimes people turn this into celiac. I don't bother to correct them usually because it doesn't make any difference.

Heck, I'll even tell a restaurant that I am allergic to wheat and barley if they don't understand. Not technically correct, but if it can get me food I can eat & keeps away the food I shouldn't eat, then all to the good. This seems easier particularly for me, since I have to avoid casein, egg, & soy as well. I tell them I am allergic. Easier than explaining IgA versus IgE antibodies and the rest They don't need to know. They just need your order.